-
- Posted Monday October 14, 2013
TGen celebrates opening of clinic for its Center for Rare Childhood Disorders
Phoenix-based clinic seeks diagnoses for children and families in search of answers
PHOENIX, Ariz. - Oct. 14, 2013 - The
Translational Genomics Research Institute (TGen)
this week celebrates the opening of a new clinic to treat children
with rare disorders that TGen's advanced technology could help
diagnosis.
The TGen Center for Rare Childhood Disorders (the Center) will
harness the latest technology for genome sequencing to pinpoint the
causes of rare childhood disorders that largely remain a mystery to
modern medicine.
The Center holds a ribbon cutting for the grand opening of its new
clinic at 10:30 a.m. Tuesday, Oct. 15, at 3330 N. 2nd Street, Suite
402.
Among the confirmed guests are: keynote speaker Dr. Richard
Carmona, 17th Surgeon General of the United States; Karie Dozer,
KTAR radio host and mother of a child with a rare disorder; Scott
Smith, Chief of Staff to Arizona Gov. Jan Brewer; Arizona House
Speaker Rep. Andy Tobin; and Phoenix Mayor Greg Stanton.
"The opening of this clinic is a remarkable milestone in the
evolution of TGen, and one that makes a significant difference in
the lives of countless children and families, not only in Arizona,
but across the nation," said Dr. Jeffrey Trent, TGen President and
Research Director.
One of the foremost examples of how genomic technology can
dramatically improve the quality of life for children with rare
disorders is 13-year-old Shelby Valint, a Phoenix girl who was
confined to a wheelchair for most of her life. After years of
inconclusive medical tests, TGen's advanced DNA analysis revealed
her body's inability to produce dopamine, a natural brain chemical
needed for muscle control and balance. With proper medication,
Shelby is now able to walk, talk, even run and dance.
"Shelby's case is just the tip of the iceberg. We hope to be able
to assist many more children with rare, often undiagnosed,
disorders," said Dr. Vinodh Narayanan, Medical Director of the
Center and manager of the new rare disorders clinic.
TGen already collaborates with local hospitals in clinical trails
devoted to cancer. This new clinic will enable TGen to use its
genomic technology to focus on helping children with multiple and
varied undiagnosed conditions.
Quotes from those attending tomorrow's celebration of TGen's new
clinic:
• "As parents, we are too often left with
nowhere to turn. Our children are often simply prescribed
medications, such as anti-seizure drugs, that only address the
symptoms," said Dozer, who also is Chair of the Center's Parent
Advisory Committee (PAC). "Many of these children have a collection
of symptoms with no name for their conditions."
• "At TGen, we now have the tools to sequence
the entire genome of these children, in a relatively short time and
at ever-lower costs. Through this examination of the billions of
chemical letters that spell out each human being's unique genome,
and analyzing all the potential genetic changes, or mutations, we
now have the ability to potentially identify the root cause of each
child's condition," said Dr. David Craig, TGen's Deputy Director of
Bioinformatics and Co-Director of the Center.
• "We want to use genetic information to
understand more about particular disorders, and develop novel
approaches to treatment," said Dr. Matt Huentelman, Associate
Professor in TGen's Neurogenomics Division and Co-Director of the
Center. "That is what is going to differentiate us from other
services - complete integration of the clinical center and the
genomic research lab."
• Phoenix Mayor Stanton: "This new clinic will
give children who are struggling with rare and devastating
illnesses an opportunity they may not otherwise have to get
better," said Mayor Greg Stanton. "Life-changing science is
taking place right in our downtown, reminding us every day of why
bioscience investment is so important for our community."
• "Modern scientific advances are uncovering the
nature and causes of disease like no other point in history," said
Dr. Carmona. "I am honored to be invited to help guide TGen's
development of this unique Center - focused on children - that uses
the latest DNA technology to understand and diagnose rare disorders
at the molecular level and to develop treatments for patients who
previously had few, if any, options for care."
# # #
About TGen
Translational Genomics Research Institute (TGen) is a Phoenix,
Arizona-based non-profit organization dedicated to conducting
groundbreaking research with life changing results. TGen is focused
on helping patients with cancer, neurological disorders and
diabetes, through cutting edge translational research (the process
of rapidly moving research towards patient benefit). TGen
physicians and scientists work to unravel the genetic components of
both common and rare complex diseases in adults and children.
Working with collaborators in the scientific and medical
communities literally worldwide, TGen makes a substantial
contribution to help our patients through efficiency and
effectiveness of the translational process. For more information,
visit:www.tgen.org.
Press Contact:
Steve Yozwiak
TGen Senior Science Writer
602-343-8704
[email protected]
